Something Scary this Way Comes

Our weekend hasn't begun in stellar fashion. Quite the opposite, really. When I got up this morning, Adam was on the phone with CHO. He shared that Logan had wet the bed twice overnight, and then peed in his pants once this morning. He said that when he suggested wearing a diaper, my independent little sunshine cried pitifully, mournfully. So right now he's still in underpants, but I know the time will comes --soon-- that he has to move into PullUps. It breaks our collective heart; he deserves a little dignity and now he has none. The one remaining shred of independence, and well, yes, dignity, is gone.

The on-call doctor Adam spoke with said she would attempt to get in touch with Dr. T. but that she assumed we'd need to go back to the original dose of decadron to control the symptoms. And my heart just fell through the floor. Why oh why is our life on earth like this? Why, God, why? I know no one can answer these questions and frankly, I don't want any of the pretty niceties thrown my way right now. It is what it is.

The reason for the relatively sudden loss of bladder control is fuzzy. It could well be the progression of the spinal cord damage manifesting symptoms, which it hadn't really done, other than his limp (and the relatively recent inability to lift his left leg as high as his right). It could also be something more nefarious that's taken root and is causing the problem. Both ideas make me lose my breath, but the first is by far the preferred, because it can be treated.

I'm angry. Sad. Frustrated. A lot of emotions that I'll probably play down just to keep the ongoing spiritual war within my own heart at bay. I will say that as I sat down to nurse Brady and Adam talked on the phone, I felt words appear on my heart: Don't be scared. A few days ago, I awoke in the morning feeling a sense of worry, because similar words had imprinted themselves on my heart as I got dressed: Don't be scared of anything scary that may happen. Even through my frustration, I remember those words and the ones from this morning and they do offer a modicum of comfort.

What they cannot do is unbreak my heart for my child. He's suffered so very much. He's weathered more than most people of more advanced age could tolerate. Though he's not the same little love he was 16 months ago, we still see glimmers of his true soul at times. Yesterday afternoon a switch flipped and he played cheerfully with Brady for 15 or 20 minutes. Peek a boo, making silly faces. And using, for the first time in a long while, his silly Ponow voice. (Ponow, in case you're unaware, is the name of his 'home planet'. It's a long-standing joke that originated long ago when he would make silly sounds and noises. When we asked what he was doing, he'd simply talk about Ponow.)

I realize I skipped an update a few days ago, too. He saw Dr. T and a few others on Thursday at clinic, just to be sure that his excessive tiredness and his clearly infected ear weren't a worrisome thing to them. He was cute and interactive while there, so we went along our merry way to see the ENT. Logan resisted having his ear cleaned, so Dr. W said he'd need to clean it out while Logan was under for a few minutes. So this Tuesday, he's scheduled to have his ear thoroughly cleaned (which will hopefully help with his hearing, which is awful right now). He'll also have a lumbar puncture at the urging of Dr. F, the L.A. based doctor who developed the Headstart protocol. He reviewed the images, and wanted to be certain that the radiation damage is indeed radiation damage and not some other sort of infection. And of course, the LP will also tell us if there are any free-floating cancer cells in his cerebrospinal fluid (CSF). Lord, I pray not.

So that's where we are. Kind of ironically, Brady's baptism is scheduled for tomorrow morning. What I feel like I want now is for the entire church body to lay their collective hands on Logan and pray for healing. Once and for all. I know healing isn't ever really a once and for all kind of thing, but I know it's possible. I know it could happen. My faith is wavering mightily, but I still have a mustard seed. And that's all we need.